A year on

Blimey, didn't realise it's been a year since I last updated!

As today is ME/CFS awareness day I thought I would spread the word again and have linked last years post.
For today I thought I would update a year on.

Thankfully I have lots of postive things to add to the list!

In a short and sweet nutshell:

• I was awarded DLA at appeal. High Rate Mobility and Low Rate Care for 2 years
• My ESA was renewed with no problems and no medical for 18 months
• I got my Blue Badge from the council with no questions asked, common sense does prevail
• I have been put in contact with the social care team and now have various equipment in my house to make life easier
• Nathan proposed to me!! (Yes, I did say yes lol)
• Currently at the time of this posting I am doing slightly better than this time last year. Small improvements like getting out a bit more and being more independent with the help of my home equipment. I'm still FAR from healthy but it's the small things that make a difference to me
• I'm getting my own wheelchair so I can get out more/stay out longer free of charge from the Red Cross on a long term loan basis
• Charlotte is now getting some well deserved respite from the Young Carers Association, they have been wonderful to her, her case worker Jo is one amazing young lady.

 There have been other knockbacks. I had a bout of glandular fever, a DVT and have now developed IBS (which is BAD at the moment) but meh, let's keep this post positive eh?

I'll try to keep this blog updated much more, there are lots of new things on the horizon this year and it's good for me to share and track, I apologise for being such a slacker on the blog front.

ME/CFS Awareness Day

I'm not the most skilled blog writer in the world, I'm one of those that blogs by saying I did X,Y and Z today, there you go!

But today I want to make a difference, even if I just make ONE more person aware of this disorder then I will be grateful.

This invisible disorder has slowly turned me invisible.  I've never had a massive circle of friends but I had a good social circle at work which has withered down to 2 or 3 that still keep in touch with me.
I can't pop down the street anymore to do errands to bump into local friends, I'm stuck indoors unless assisted. I haven't even seen one of my next door neighbours for over a month.
When I'm sitting on the sofa I can see out of my living room window and I live on a main road in my small town. I see people walk by, cars go by - the world is moving but I'm not. I'm in my own world, and let me tell you, it's pretty bloody boring when I'm alone in it. It's depressing, it's frustrating, it's miserable.

I'm trying desperately not to let this take over my life but there are days I can't even lift myself off the sofa, M.E has control of ME.

There are 2 people in this world that have made the most enormous difference to my life. Nathan, my long suffering boyfriend of almost a year and June, my long suffering best mate of almost 9 years. They are two of the most inspiring, encouraging and kind hearted people I have ever met. They make sure I'm ok, they get me out of the house, they hold my arms when I have to tackle the odd set of stairs, they make me laugh, they keep me going when I feel like I'm losing the fight they understand completely when I have to cancel plans because I'm just too ill, I feel their love everyday and I love them back just as much. I may have this awful, demeaning, debilitating disorder, but with them both in my life I am one of the luckiest people on the planet.

I know you see pictures of me in the local pubs, I know some of you probably think 'well she can't be THAT ill can she?' actually, yes I can. What you don't see is the preparation and end result of what an often taken for granted thing like going to the pub is for me.
I have to completely rest for the whole week beforehand
I have to get Nathan to wash me, iron my clothes and put the clothes on me. It's humiliating, believe me.
I have to make sure I have all my medication with me and everything else I need but can't put too much because my bag will be too heavy for me to cope with.
I worry to the point of sheer fear sometimes that there won't be a seat for me when I get there.
I spend the morning and afternoon convincing myself, talking to myself and psyching myself up just to get there.
I have to dose myself up on all my painkillers to try and numb the pain so I can atleast sit comfortably for a while.
I have to wear clothes a size too big so I can handle them easier when I go to the toilet.Which makes me feel, and look fat. After successfully losing 6 stone it means a lot to me, 2 stones have managed to creep back on and in the condition I'm in, I can't do a thing about it because exercise is impossible.

All that before I've even got there.

I don't want sympathy, I want understanding and awareness. I want this RIDICULOUS rumour that ME/CFS is all in the mind to stop. I want healthcare ministers to acknowledge this disorder and HELP us, not turn us away like they have with me and THOUSANDS of others.

Share this blog, print it, show it to your friends, link it on Facebook, Twitter, anywhere. Get the word out. PLEASE show support by sharing, that's all it takes, no money involved. You won't die, it's not a chain letter, just forward this post to as many people as you want.
We're here, there are over 200,000 of us in  JUST the UK suffering and we want to be heard and understood. Please, if you can do one thing for me,  make us heard by sharing what you've read today.

An eventful week

This week is proving to be quite eventful.

It was my birthday on Tuesday which was lovely, Nathan took me down the local pub for a couple of drinks to get me out in the lovely weather we had that day and my best friend June joined us when she had finished work. Nathan got me an amazing bag which is so different and June got me a beautiful shirt from Next and some lovely flowers which are currently filling my room with the most gorgeous smell!
Wednesday was the day I got my DLA decision after waiting 2 months. As much I was expecting the result I think it angered me even more because they haven't even given me a medical. Needless to say I'm appealing and will take it as far as I can go. I also had to go with Charlotte to the hospital as she was called for another 24hr ECG to see how her heart is doing.
Thursday was my first 'pathways to work' meeting at the job centre. The advisor Mick was a lovely chap who explained everything to me and was genuinely shocked about my DLA decision and thought it was ridiculous I was even there as he could see how much I was struggling.  He gave me a bit more insight into the benefit itself, what I can and can't do and I learnt a few things which was good. He was really supportive and even arranged for me to have my travel expenses paid so I was given £5.25 for petrol in cash on the spot which was really nice!  I was also back at the hospital so they could take off Charlottes ECG machine and download the results.
Today I'm off to my mums later if I feel ok to collect my birthday goodies from her and my brother, I'm trying to conserve as much energy as I can as I've had such a busy week and I really want to see my mum, so today will be spent doing as little as possible so hopefully I'm ok to go this evening.
Sunday is another big day, my ESA medical, something I'm dreading and something I'm expecting to appeal like my DLA decision, I'm mostly expecting them to give me a big fat zero on my points so they'll say I'm fit for work. Time will tell.
The good thing about ESA is that they are actually on schedule with me, which considering the stories I read on a daily basis is a rare thing. I'm supposed to have my medical and the result within the first 13 weeks of claiming. I'm now in week 6 so it's going ok. I've read some people being on ESA for 6 months and no sign of a medical so I'm counting myself quite lucky because once the medical is done and the results are back, if I'm (like I should be) placed in either the care group (NO chance) or the working group (most likely) it'll be a raise of about £20 a week in my pocket which I shan't complain about. Before your medical you are on the 'assessment rate' of ESA which is pittance.
My medical is in Northampton which is about a 30-40 minute drive away so I'll be knackered before I even get there, but I was told you can claim petrol money back for going so I'll be making sure I do that!

I also got my letter through from Physiotherapy, there is now space for me so I need to call them to make an appointment. I'm really not sure how it will help me, but I'm not a doctor so I'll go and see how things are.

Please cross your fingers for me on Sunday!

Quelle Surprise.

Got my DLA decision today.

Turned down flat, no mobility component, no care component.

According to them, without even seeing me I can:
Walk up to 50 meters - WRONG
Wash, bathe, shower or dry myself - WRONG
Dress and undress - WRONG
Get up and down stairs - WRONG

I am:
Not at risk of falling - WRONG

I do not need help to:
Use a cooker - WRONG
Carry and lift safely - WRONG
Get in and out of a chair - WRONG




Amongst other things I'm frankly too angry to even type about at the moment.

I'll see them at the tribunal then.

So pretend you're in a wheelchair...

Once again, a bombshell that could cause huge financial hardship to tens of thousands of claimants has been dropped, virtually unnoticed, by a government minister.
The shock plans, for ‘simplifying’ the work capability assessment for employment and support allowance (ESA) include docking points from amputees who can lift and carry with their stumps. Claimants with speech problems who can write a sign saying, for example, ‘The office is on fire!’ will score no points for speech and deaf claimants who can read the sign will lose all their points for hearing.
Meanwhile, for ‘health and safety reasons’ all points scored for problems with bending and kneeling are to be abolished and claimants who have difficulty walking can be assessed using imaginary wheelchairs. 
These changes, and many more, have already been approved by the secretary of state for work and pensions but have not yet passed into law. They will affect both ESA claimants and the 1.5 million incapacity benefits claimants waiting to be assessed for ESA.


Read the full story HERE 

I'm scared enough about my medical as it is. When Jeanine came round to help me with my form she told me about some cases she was helping to appeal. One that stuck in my mind was a woman that scored 0 points, one of the reasons for this was that the "doctor" believed she could "walk her dog for 20 minutes a day"....the woman didn't even have a dog.


I got a leaflet put through my door the other day from my local MP (Labour) spewing the usual crap but there was a check box to say you wanted to see him and they would be in touch.
I think I'm going to tick that box and see just want he thinks about the matter because unless he loudly condemns this AWFUL plan then he won't be getting my vote.

"There's no such word as can't!" ...wanna bet?

It's taken me all afternoon to fill in (what I can) the ESA50 novel form and I could only complete about 20% of it the rest I have to wait to fill in when Jeanine comes over tomorrow.
I find all this form filling in more exhausting than physical activity half the time even when I try and be good to myself by typing my answers and printing them out so Jeanine can do the actual writing on the form for me. My back aches, my fingers ache from typing, I swap from the desktop to the laptop to try and keep the pain down and it mentally drains me because you spend the whole time fighting your built in coping mechanism.
The coping mechanism is the brave face, the 'don't worry about me!' facade, 'yeah, I'm tired but I'm ok' answers, the 'I do it because I have no choice' answers when in reality I haven't eaten or drank all day due to sheer exhaustion or haven't washed my hair for over a week because I didn't have someone to help me and to be perfectly blunt, I look a mess and I stink.
I just can't be that person that says 'I cant do this, this and this' because if I keep saying that I'll stop trying. But you can't be that way when filling out the benefit forms because if you put on your facade and your brave face then they presume you can do all these wonderful and physical things and you get no help.So down comes the facade and the brave face and you're painfully reminded of what exactly you can't do. The list gets longer and longer as you go through the form and the 'Can't's' woefully outnumber the 'Can's' by 20 to 1. Food for thought? More like a whole menu and the dessert list on top, and don't forget the complimentary mint with the bill too...

Weekend update

I had a lovely weekend, got out of the house and enjoyed some sunshine!
We went off to see Alice which was great, I really enjoyed it and then we went for a meal at the Brewers Fayre afterwards which was delicious!
It did wipe me out though and I spent the rest of the Saturday dozing on and off on the sofa all evening, I think I spent more of it asleep than awake.
Putting the clocks forward has messed me up a bit too and I've found myself waking up even earlier than normal.
Sunday was nice too, we went to Nathans town and stopped in a couple of places to have a drink and enjoy the glorious weather we got, it was lovely and sunny and warm enough not to wear a jacket which was great, it really did brighten me up and Charlotte got her first experience of skittles!

The nice weekend has filled me with motivation and today I have been printing and making up lists so I have something to do each day health permitting. I've written a weekly and monthly housework planner and got all my ESA/DLA paperwork back in order as I'd been slacking in that department.

I really wasn't keen on roping Charlotte into the housework but the bottom line is, she needs to. She won't be doing everything, I don't think that's fair at all, but she has agreed to help me with some things and take care of her own bedroom. Nathan does most of it for me and it's so unfair, he works full time as it is and the last thing I want is for him to walk in and start dancing with the hoover, his evenings should be rest time, not doing someone elses housework.
He genuinely doesn't mind and his happy to do it for me, I think it's a way he feels he knows he can help as there is nothing he can do about my pain and fatigue but I mind, I don't like the idea of him doing it.
I'm at the stage now where I know if it will tire me out too much I won't do it, rather than do it anyway and regret it later but I'm filled with frustration that I can't do more than I currently can.
I'll pay Charlotte for her help once my ESA is sorted out and/or my DLA, whichever is first, at the whopping £31 a week I'm currently receiving I can't,.but I have promised to buy her a game for the Wii when it comes out on the 23rd of April.

This week I intend to rest as much as possible as me, Nathan and my best friend June are off to the coast on Saturday. I'll go if it kills me, as much as I love my town I'm yearning to get out, to feel some freedom, to see some new scenery. I don't care if it's cold, I don't care if it's raining, I don't care if I spend the rest of the week in bed because of it, I'm bloody going!!

On the completely un-organised side of thing I've been forgetting to take my amitriptyline. I haven't taken it for 3 nights now which I have no excuses for as I have my pill reminder case right infront of me all the time. I think it's the whole '2 hours before bed' thing that's throwing me, I don't sleep at a set time, I sleep when I feel the need to, and I don't know 2 hours in advance when that will be! So this week I'm trying to be organised with it and take it at a set time roughly 2 hours before my average bedtime and if its 3 hours beforehand or only an hour, sod it, it'll do. Taking the tablet at a rough time is better than not taking it at all.

I still haven't had my form through from the council for my blue badge, it seems that the chap I spoke to has forgotten me so now I'm in limbo again of trying to decide whether to apply now and go through the checks and medical or just wait for my DLA decision and hope I get High Rate Mobility (yeahhhhhhhhhhhhh right)

I managed to get hold of Jeanine about my ESA medical form and she was her usual aloof  'I really haven't got time for this' self and I barely managed to finish a sentence and got told off for trying to be detailed as possible and telling her something 'completely irrelevant', I just hope she's in a better mood when she comes to help me on April 9th, she seemed a completely different person when she helped me with my DLA form.